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Monday, 31 October 2011

The Hot Water Bottle (and Other Stories)

Apparently, I learned this week, it's not normal to pack a hot water bottle for every trip away from home, or to use it constantly. I love my hottie!

Not only is it immensely comforting to have something warm to cuddle, it helps me to regulate my body temperature (something that my body is incapable of doing without help), and helps to soothe those myriad aches and pains.

At home, I have two hot water bottles - one of them has a knitted cover, and the other has a fleece cover. I find that concentrating on different textures and temperatures can distract me for a while when I'm taking life a few seconds at a time.

That's not supposed to sound melodramatic. It's just how things are sometimes.

Three of my main symptoms, pain, nausea and shortness of breath, can seem all-encompassing when severe. My world seems to shrink (or the symptoms seem to expand) until it's just me and the pain. Using all my senses to cling to the edges of reality gives me the illusion that I still have control over my world. I strain to notice every sound, every scent, every texture, temperature, taste, shape and colour.

Having said that, I realise that there are also times when I can't cope with even the smallest sensory input. My autonomic nervous system (the one that controls temperature, blood pressure, heart rate, etc.) is already so confused that sometimes even just light or sound can be enough to trigger everything to go pear-shaped.

My advice to myself seems almost contradictory:
1. Go with the flow
2. Be prepared

My symptoms can be unpredictable. I have no way of knowing when any particular joint (or joints) might dislocate, causing horrible pain; I can't control my autonomic nervous system, my blood sugars, energy levels, gastrointestinal symptoms or breathing. Sometimes things go wonderfully, blissfully right, and other times they go horribly, uncontrollably wrong. I don't get much of a say in which way things will happen, but fretting about it doesn't help.

What does help is planning ahead and having the right 'kit' to hand. I try to keep plans as flexible as possible, depending on symptoms, and when I do go out, I try to be prepared for all (well, most) eventualities. My handbag is sizeable. My husband says that it's bigger than the world, which is almost true. I do, on occasion, feel like Mary Poppins, pulling useful item after useful item from its cavernous depths.

The contents of my handbag are worthy of their own post. Watch this space...

About Me

Despite my best efforts, I still spend about 1/3 of my time in hospital (not including outpatient appointments). I have a genetic disorder that affects my joints, my digestive system, my autonomic nervous system (control of blood pressure, heart rate, temperature, and other 'automatic' functions) and hearing. I also have severe asthma. The combination of these things means that I'm almost always exhausted and in pain - this is how I live my life. There is no cure that will restore my quality of life to 'normal', so I have to find quality in what I have. I like things to be organised (makes life easier), love to be surrounded by beautiful things, enjoy knitting, reading and baking. As with all things, however, nothing is perfect, and we all make compromises as we try to make the best of what we have.